I met with a new doc at MD Anderson and I am switching my care. What a difference it was to be at Anderson. Everyone was so warm, friendly and understanding. I never felt rushed and they answered all my questions no matter how stupid I thought they might be!
The specialist at Anderson told me he'll do the 1/2 strength but if my reactions are as bad as my 5th and 6th were then he will switch to Mitomycin, which he states he feels is less dramatic a reaction and every bit as good at fighting my TaN0M0 high grade. I start the end of the month.
It really makes a difference to be at a place and with a doctor you can talk with and as well as the rest of the team.
At BCG #28 I finally reacted to such an extent that the my two offered options were stop BCG or reduce the dose - so reduce it was The warnings of increasing reaction (for some of us) appears to be true for me.
Researcher Michael McDonnell addresses some of the non-supported "customs" of BCG in his FAQ, beginning on page 13 of the article at:
Dr. Donald Lamm has addressed the question of why the "official" protocol has not been updated to reflect lower doses in a number of publications - perhaps none more to the point than within an 8 year old post on this, the ABCS website:
We are indebted to Mike, 'mmc', for asking Dr. Lamm, reporting the response, and for his many contributions to this site.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Donna, there is no real scientific reason for the dose of BCG given. I was told that this is what was commercially available when it was first used and found to be effective. Some people never experience excessive discomfort with the initial dose and some cannot tolerate it at all. As you have found out, side effects increase as the treatments go on and the body becomes more sensitized to it. And this is what we WANT to happen.....this shows that the immune system is "kicked up" to fight the cancer. And when this happens, and the side effects become intolerable, the dose can be reduced and still be effective. I was on 1/3 the initial dose when I completed my maintenance treatments and some people finish up at 1/10th the initial dose.
Since most people are OK, at least at the beginning, with the initial dose, and since it has been shown to be effective,
that is what is used. I would wonder if the reduced dose would be as effective before the immune system has been stimulated.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi, All,
I had my three-month followup cystoscopy this morning with washings sent to lab for cytology. The doc said the bladder looked nice and clean and we'll wait on the results (about two weeks or less) and then start the BCG x3. He said since my side effects were nasty he would half dose the BCG this time.
I have a question, though. I asked if it is still effective. He said it is. My next question I did not get to ask, so will hang it out here...................then why do they give so much and not just give the half dose if it is just as effective?
Honestly, I have a questioning mind and sometimes wonder why I can't get full explanations - LOL.
Keep well everyone and may you be hugged by God and kept peaceful and laughing!
